In the article, New Yorker staff writer Michael Specter describes the controversies surrounding this tick-borne illness, whose incidence has expanded rapidly in recent decades and whose symptoms, if not treated and eradicated, can be devastating.

At one end of the controversy are physicians and others who believe that if a patient with Lyme disease is given the standard three-week treatment of antibiotics and continues to have symptoms, then those lingering symptoms are psychological, not physical.

At the other end are Lyme-disease activists who claim that the National Institutes of Health are in cahoots with Big Pharma to ignore chronic cases of the disease and that mainstream-media reporters have been “muzzled” to keep the truth about this collusion from reaching the public.

Lyme disease is, of course, a major health concern here in Minnesota. There were almost 13,000 confirmed cases of the illness diagnosed in the state between 1996 and 2012. In addition, the Lyme-disease incidence rate has been increasing “dramatically” over the past two decades, according to the Minnesota Department of Health. Some of that increase is the result of more awareness about the disease by Minnesota physicians and patients. But some is also probably the result of more ticks carrying the disease and the wider spread of those ticks throughout the state.

Few undisputed facts

Lyme disease is caused by the bacterium Borrelia burgdorferi, which is transmitted to humans by the bite of various species of a black-legged tick. Here in the Midwest, that species is Ixodes scapularis.

As Specter points out, those are about the only facts related to Lyme disease that remain undisputed:

Nearly everything else about Lyme disease — the symptoms, the diagnosis, the prevalence, the behavior of the borrelia spirochete after it infects the body, and the correct approach to treatment — is contested bitterly and publicly. Even the definition of Lyme disease, and the terminology used to describe it, has fuelled years of acrimonious debate. The conventional medical assessment is straightforward: in most cases, the tick bite causes a skin rash, called erythema migrans, which is easily identified by its bull’s-eye. If left untreated, the bacteria can spread to muscles, joints, the heart and even the brain. Public-health officials say that a few weeks of antibiotic treatment will almost always wipe out the infection, and that relapses are rare. In this view, put forth in guidelines issued by the Infectious Diseases Society of America, Lyme is normally easy to treat and easy to cure.

For many people, though, the clinical situation is far more complicated. Some who have been infected with borrelia don’t notice the rash. Others — up to a quarter of those with Lyme … — never even get one. Most troubling, some patients who are treated continue to suffer from a variety of symptoms long after their therapy has ended. Nobody really knows why they fail to get better. Infectious-disease experts refer to the phenomenon, which can affect up to twenty per cent of patients, as Post-Treatment Lyme Disease Syndrome. Researchers have attempted to resolve the mystery in experiments with monkeys, mice, and dogs; human studies are also under way. As the number of infections grows, so does the number of people struggling to figure out what is wrong with them.

Adding to the complexity of diagnosing and treating the disease is the fact that at least four additional pathogens are transmitted by the black-legged tick.

“Some of these infections are more dangerous than Lyme, and more than one can infect a person at the same time,” writes Specter. “Simultaneous infection, scientists suggest, may well enhance the strength of the assault on the immune system, while making the disease itself harder to treat or recognize.”

‘Chronic Lyme’ dispute

The idea of “chronic Lyme” is at the heart of the current controversies surrounding this illness. Many patients, advocates and “Lyme-literate” physicians believe “that a cure requires not weeks but months or years of strong antibiotics” as well as dietary, electromagnetic and other non-evidence-based therapies, writes Specter.

But most in the medical community, he explains, “reject the term ‘chronic Lyme,’ in part because many people who say they have it are not infected with borrelia. Without biological proof — a positive blood test or the telltale skin rash — the symptoms are vague and varied and could apply to many conditions.”

“I am sympathetic to people who are suffering,” one infectious disease expert told Spector. “And I have no doubt that they are. But if you have not been infected with borrelia you can’t have Lyme disease. We don’t have all the answers. We never do. These people are true believers. But I’m an infectious-disease doctor. I understand pathogens that cause disease and I understand the manifestations of those infections. Believing or not believing is not part of the process.”

Lessons from AIDS activism

Although physicians and scientists, writes Spector, “sometimes seem to respond more comfortably to data than to people,” many Lyme-disease activists are hurting their cause by fostering “dark conspiracies” and advocating unproven treatments.

“There is now a bill before the legislature in New York that would require insurance companies to reimburse long-term treatment with antibiotics — even though no study has proved their effectiveness, and treatment with I.V. antibiotics can cause serious, and sometimes fatal, complications,” he points out.

The current atmosphere surrounding Lyme disease activism “resembles that of the early days of AIDS activism,” notes Specter, “when many of the individuals most at risk lost confidence in their doctors and sought their own medical answers. In the end, organizers of ACT UP and the Gay Men’s Health Crisis became well known for their public protests, but they succeeded for another reason: They did their homework. Nobody was more knowledgeable about the course of H.I.V. infection that the best-informed activists.”

Comments (1)

“…Believing or not believing is not part of the process” is a sentence that could be applicable to quite a few medical conditions about which there’s currently not as much certainty as we’d like, and also seems relevant to numerous individuals and groups whose faith in the scientific method is, shall we say, limited. Examples include folks opposed to immunizations, folks opposed to pasteurization, and so on.